People who see you in a café or on the street, who talk with you at work or in the shops see a normal young woman. Fairly decent looking, soft around the curves, blue eyes and a quick smile. They see a person whom they probably forget moments later as that’s what we do with
strangers – passersby who don’t occupy a permanent space in our continuum of daily routines.
Quite unremarkably, our daily lives evolve around our own needs, wants, routines – our very own do’s and don’ts. Those passersby wouldn’t “sense” the churn in your gut, the ping-pong match inside your head, the tremor in your hands which you keep deliberately constantly busy or in your pockets; you don’t mean to wave so much when you talk – it’s a means to an end. They wouldn’t notice the wobble in your legs or tightness in your chest, or mourn with you the sudden shorter haircut you just had (as you try to hide the drastic hair loss).
Even those closest to you whom you see or speak to nearly on a daily basis miss the signs – not due to any fault of their own, but rather because you have become a master of guises as varied as your symptoms. One for each day, person and definitely each situation, warranted or not. You know whom you can be weak with and whom not, though given the choice you wouldn’t anyway. So you put on an act.
With no outward, visible, tangible symptoms who would believe you anyway? You don’t ail the same way as they do, bounce back the way they do, snap out of it like they would, spend your times of remission they way the expect, or deal with your relapses as they have advised. So you must be okay.
It is an invisible illness as when you see me you see no scars, you see no bodily fluids oozing out of me in dramatic gushes and you don’t hear me moan as I hold my forehead, a lady about to faint, softly and delicately. As one ought. But I don’t
It can’t be that bad if you’re out and about, right? It can’t be that – you ate that burger! It can’t be that bad when you can come to work.
They don’t know that going out is a form of self-medication; they don’t know how walking helps with pain or how socialising helps your mood despite being so doped on the meds they bump into you that you can barely follow a conversation.
Or you just needed a distraction, a feel for normalcy.
They don’t know that the day before that burger you ate nothing because even a sip of water would create cramps so violent you threw up pile and today you are feeling better – and ravenous. You got to take those moments because you don’t know when the next one comes around.
They don’t see how despair each morning when you discovery yet another piece of clothing you don’t fit in anymore as the medication that is helping you also comes with an anthology of side effects and makes your body distort. You win some you lose some.
They don’t see that the smile, quick wit and talent for banter you spout and the non-stop go-go-go you are at work is letting you try to be one of them, not the weak link, show yourself and them you can do it, you are valuable, you can be productive member of society – and that makes a difference for them and you. You are not alone.
Every invisible illness is as different as is every survivor. The coping mechanisms suit our needs, not your wants. Some want, yearn and demand their illness to be recognised, understood and seen so they don’t struggle alone. They want awareness. Some just want to plod along, un-judged and unnoticed. Move on and forget that today it took me an hour to convince myself to get out of bed and get dressed and go out just for a cup of tea so I feel like me, not like a piece of furniture. Some are (admittedly like the writer) stubborn and proud and hate nothing more than to be continuously seen as a patient, as someone who is sick, to be felt sorry for. The attention, pity, disbelief, worry, and resentment, the desperate want to help and want to make it better for you – it all piles up. And many in recovery tend to end up caring more for those wanting to help than helping themselves.
“Pick yourself up, dust yourself off, puck up buttercup.
So much to look forward to, you can do it.
Try this, you’ll see, you’ll feel different.
It’s a new day, keep your head up.
It’ll pass, just take your meds.
You’re over-thinking it.
You don’t look sick.
It could be worse.
Snap out of it.”
See, that gig I went to? Did you see how I spent half of it crouched behind peoples’ legs as I couldn’t stand upright from pain? Or did you know I took the first sick leave in more than a year just so I could have time start the recovery my way – not yours. If it makes you feel better to scrutinize my way of weaving through this rotten hand I’ve been dealt with, telling everyone she must not be sick because she is walking, talking, socialising, or eating this and drinking that, that is your prerogative. But don’t do it behind my back, don’t analyze me without having a day in a body that is attacking you, or a mind that paints a picture you don’t quite grasp see or a brain that disconnects and connects at lightning speed from one thing to another. Talk to me. Look at me. See me.
If you don’t see me, don’t judge me – I might not do what you expected from me, but I am doing my best to do what is right for me. I am not you – I am a rainbow; and I quite like me.